Cindy...
I had same surgery as you although my AN was not as large as yours. I am almost 13 months out from surgery and understand completely what you mean about throwing in the towel. I moved from Indiana to Nebraska 6 weeks after surgery so no longer have access to the neurosurgeon that did my surgery, but have found a superb substitute nearby.
I have suffered from headaches since the beginning...searing, totally disabling, horrific headaches. My original neurosurgeon had prescribed hydrocodone for them which was continued by my general practitioner here in Nebraska. I was popping them like candy with no relief until my sister told me about rebound headaches. I stopped taking them and spent several terrible days cleansing my system of them since I had managed to become addicted to them. My GP and I had a serious discussion about them and she started playing musical migraine remedies even though I kept trying to explain to her that the headaches were not migraines.
When my current neurosurgeon first saw me at 6 months post-op, he was pretty confident he knew the cause of my headaches and that he could 'fix' them until he saw my MRI. He had assumed they were related to either the mesh or bone chips used to close the surgical site in my skull. What he found was that nothing had been used to close the 'hole in my head'...thus, he could find no surgical cause for my headaches.
A few weeks ago, I saw a neurologist for the first time since my surgery. He asked about a specific medication I was taking and asked me to describe the headaches. Within minutes, he diagnosed me with neuralgia and prescribed neurontin for me. The searing, painful scalp pain is almost gone. I've still had a few really bad headaches, but now I know there are multiple things going on in my head that are causing pain.
I guess what I'm trying to say is that I agree with everything everyone else has said....
1. Medications can cause headaches and they can be horrible.
2. Sometimes, the best medicine can be no medicine.
3. Doctors don't seem to know how to treat us. They try, but we seem to know more than they do about what is wrong with
us.
4. Don't give up! It might be the next professional you see or the next person you talk to or who posts online that can help you.
5. We are always here for you...ask questions, vent, whine, cry, laugh, whatever you need us for...
When I was first diagnosed, my neurosurgeon sent me home and told me to search the internet and educate myself as much as I could about ANs. That was how I found this website. There is a study out here that was done several years ago so the data is no longer current, but it really helped me to have patience with the professionals I've dealt with in the last year. The main thing that I seemed to learn from it is that while the ability to diagnose an AN may be improving, the post-treatment care seems to be a broken record. I don't think it's the medical community's fault so much as that more research is needed. While most of us out here may have had the same type of tumor and generally are still in watch and wait status or have had it treated surgically or with some form of radiation, I do not believe there are two of us that have had the same identical combination of post-op complications. We can usually find at least one other person who has experienced a similar complication or two, but we each have our own unique set of complications. I think that makes it very difficult for most professionals to understand us and to know how to treat us. That's why it's so important for us to help one another. If you don't find what you need out here today, it might be here tomorrow or next week or next month. Just hang in there...we're all praying for each other.
